Amelia - Autistic Michigander

I am struggling to stay active on this page.

It’s not making a post that is hard.

My struggle is corresponding with people.

There is also a struggle with monitoring.

Meaning, I feel I have some responsibility to shut down trolls.

I’ve had more bad days than good days with my autoimmune disease.

I’ve been on Tremfya since Xmas and it seems it’s just not working.

The last time I had bloodwork, my CRP went up, not down. Which is the opposite of what these meds are supposed to do.

I have a rheumatologist appointment in a few weeks.

I think it’s back to the drawing table.

They told me if Tremfya doesn’t work, they want to consider trying another infusion med.

The injection meds just aren’t strong enough for my condition.

I have lots of ideas. I have lots I wanna say.

I’ve just been too tired to correspond with people after I post.

It’s possible this page will be stagnant for awhile ☹️

Agree

I struggle to understand people with histrionic personality traits.

And no, I’m not judging.

I’m genuinely, and seriously, trying to wrap my head around it.

I’m trying, REALLY HARD, to find the patience and understanding.

Someone, please give me some tools and coping mechanisms to deal with someone that has a histrionic personality.

I’m trying REALLY HARD.

I want to shut down with them but I’m worried that would be toxic and make things worse.

Any advice is helps.

Thank you ❤️

Just venting 🙄

So I go to PT yesterday after work and they had a discussion with me about how to move forward with therapy and what it’s doing for me.

I’ve been struggling to decide if PT is helping because I’m also taking meloxicam daily.

Meaning, is it the PT that has me feeling better or is it this stronger prescription NSAID that they’re allowing me to take every 24 hours?

I missed a meloxicam Thursday last week and suffered for it.

I was fine Thursday, but I could tell on Friday that I had this 24 hour gap without this med.

As of yesterday, the insurance company only wants to extend therapy by 4 more visits because I was honest and reported that I’m unsure if PT is helping.

They explained to me that the insurance company will use what I say as an excuse not to cover because, according to them, if it’s not working then why pay for it to continue.

To be clear, I never once stated that PT isn’t working. I only stated, at my last evaluation, that I couldn’t gauge how much it was helping because I take this drug for inflammation.

It’s clear a daily prescription NSAID is helping with pain control.

But the reality is, it’s not healthy to take it like this long term. Eventually, I will have to wean back or find some other way to manage pain.

You wanna know why I’m getting really heated up about this though?!!!

It’s because this pain issue is 100% the fault of my health insurance company!!!!!

I don’t believe I would need meloxicam daily or PT if I was still on remicade.

And it’s 100% their fault and was their decision to stop covering the infusion cost of that med.

Is it their fault I have autoimmune disease? Obviously, no.

But I had a medication that was working for me.

I had a medication that brought my CRP down to zero and changed my quality of life for the better.

Biologics are expensive.

But so is covering repeat rheumatology visits for chronic pain and missed work, overpriced steroid injections, and PT visits.

They’re paying for all of that when the evidence is CLEAR that my Remicade treatments were treating most my autoimmune symptoms 100%.

And it wasn’t the cost of Remicade that is the issue. Remicade is one of the oldest biologics on the market.

And it’s tried and true. A lot of people with my condition have had success with it.

No, it’s not the cost of the drug.

They don’t want to pay to have it infused. It’s the cost of paying the infusion center.

They don’t want to pay that when I can get a biologic injector for free from a manufacturer and I can inject myself on my own time.

A lot of people have success on these new injectors. I have nothing bad to say about them.

But they aren’t working for ME.

I’ve been on Tremfya since Christmas and my CRP has gone UP, not down.

I have tried two other injectibles before Tremfya with no success or awful side effects.

I’m trying SO HARD not to let this disease dictate my life or ruin my career.

I’m trying SO HARD not to call into my job.

I love my job. It brings me joy. It gives me a sense of purpose.

My job keeps me moving which is necessary for this disease I have.

I’ve been on Tremfya since Christmas, I’ve received steroid injections, prednisone treatments, and rounds of PT.

Nine months on this drug and I called in today for pain.

I’m in pain every day and I’ve been sucking it up and winging life.

I have one more Tremfya injection before my rheumatologist decides if we are changing drugs or not.

I’m very tired. Because how f***** dare they give me beef over covering physical therapy when I didn’t need it AT ALL when I had an infused med?

I’m a good patient and I’m a good worker.

I’m sick of the health insurance company dictating my care and costing me my quality of life.

I shouldn’t be living like this with all the options for people with my condition today.

There is no logical reason why this is happening.

So I’m asking for a pain specialist referral and they can pay for that as well.

Because f*ck them!! That’s why!!!

I need a really good pair of noise cancelling headphones.

Not buds, actual headphones.

I have buds that I like but they aren’t quite enough in some situations.

I’m currently looking online at a pair of Bose headphones.

They have good reviews but of course, they’re very expensive.

So if anyone has recommendations, noise cancelling and cordless headphones, that you’ve been happy with and would buy again……. please let me know what those are.

Bonus points if they’re cheaper than Bose.

Bose makes a good product but I’m really on the fence about footing that kind of money.

Please help and thank you 🤗

When I want to believe that PT is helping me but I can’t tell because I’ve been taking meloxicam daily for weeks.

So is it the PT or the meloxicam that is making me feel better?

I skipped meloxicam yesterday.

I’m paying for it today.

I missed one 24 hour dose and I’m quickly reminded of how much this disease is kicking my a $ $.

It’s 2026 and we share the earth with people who don’t understand what an ectopic pregnancy is.

These people vote.

Some of these people have a uterus.

I’m a surgical assist with a lot of experience in GYN.

I’ve assisted on hundred of GYN cases.

Many, many, many emergency cases.

And even after explaining to people my work experience and what it has looked like over the past 20 years, people try to tell me(with their full chest) that I don’t know what I’m talking about.

I’ve even been accused of lying or getting paid to lie.

Growing up, I wasn’t warned that I was going to share the earth with so many lead poisoned brains.

My brain effin hurts.

You can explain all you want to some people.

You can’t understand it for them.

When we have people arguing against the very people who’ve worked these cases…….. we are screwed as a country.

I love children. I raised two girls on my own.

If not for my autoimmune disease and the cost of raising humans, I would have had more than two. For sure, 100% I would have had more children.

Despite that, I’m accused of “hating babies” and supporting the “unaliving” of them because I know EXACTLY what an ectopic pregnancy is and I know how it’s addressed when it happens.

I don’t just know from the books.

I’ve literally ASSISTED those fu€ K!ng cases!

When I first became an assist, I was deeply religious and was 100% anti choice.

I had that stance when I assisted those cases.

But sure, accuse me of being biased and hating children.

The people I stand in line with at the voting booths are exhausting.

And I’m utterly embarrassed that I was ever as ignorant as these people.

I hate that it used to be me. I hate it.

It’s so cringe. I just want to roll up in a ball and hide my face.

PLEASE listen to the people who are involved in these types of cases.

Please listen to the healthcare workers who’ve worked these cases in the operating rooms!!

WE ARE NOT LYING TO YOU!!!!

I found some of your hairs this morning in boots that I handed down to a coworker. I miss you buddy ❤️❤️❤️

Also, what is considered “junk” food is subjective. So where does it end?? Where do they draw the line? They already have rules, for prepared foods, that are highly unfair to the disabled community.

It is absolutely none of my business what someone receiving food stamps purchases with this benefit.
✨🥕🍔🍰✨

Image description: white text on a teal background that reads:

“Food stamps no longer covering "junk food" might sound positive on paper to some, but let's consider what that actually means.

A food stamps recipient no longer being able to purchase ginger ale if they have an upset stomach.

A parent receiving food stamps not being able to afford a birthday cake for their child or cupcakes for a school party.

A physically disabled recipient no longer being able to buy frozen meals even though they cannot cook for themselves.”